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August 3, 2006
By Margot | August 3, 2006
Sorry for the lack of update yesterday. Neil met with Dr. Marris and he thinks we should go on the Fenretinide trial and has already saved a spot for us. He is truly amazing. He’s talking with Dr. Willert, and Dr. Villablanca at CHLA. Dr. Willert has been really great in terms of communicating and being willing to work as a team with Dr. Marris and other neuroblastoma experts. To be on the trial we will do another MIBG scan before we start on it to set a baseline. If the VMA and HVA come back normal today (possibly tomorrow) then we have a shot that the new MIBG will show no spot or show it as what they call an artifact. Then we can just chalk this up to a parent’s worst nightmare and that will be that. Dr. Marris doesn’t really think that will be the case. The Fenretinide trial (what I know about it – I’ll learn more soon) consists of Sam taking an oral powder (I think mixed in a shake) twice a day for seven days on and 21 days off. He can do it at home and the side effects are supposed to minimal or none at all – though I think Christi Thomas has major stomach pains from it. It is a low toxicity drug and some kids have been on it for a couple of years and it’s worked. Being on trial allows us to get the maximum dosage which is good. Sam would be able to be at home, go to school and I think most of the normal things he does (I still need to learn more about it). Neil can give a better definition of what it is and why it works.
Neil is at Memorial Sloan Kettering in New York today talking with them about antibodies. He hasn’t had his meeting yet with them but said the hospital is beautiful – brand new and the pediatric wing has a big atrium open to the sunlight and there were three clowns there entertaining the kids. I think we are pretty sure we will go with Fenretinide first to see if it works and then maybe other options after that but we want to talk with MSKCC about antibodies and what the downside is to keeping them up our sleeve if we need them later. The antibodies would entail Sam taking high dose chemo to knock out his immune system (not always something you want to do less than two years after transplant) and then he would be in New York for the antibodies for two weeks on and then have six weeks off . The parents we’ve talked to said that the antibodies themselves (not the high dose chemo) also allow a good quality of life because after the infusion stops, there are no side effects. During the infusion the kids are in a lot of pain because the antibodies target the nerve cells but I know MSKCC has figured how to manage it very well and has even been able to up the dosage of the antibodies for better effect. There are actually comparatively a lot of kids that we know of that have responded very well to antibodies after relapse – NED two years out. I hope I’m getting all this right – I know my scientific explanations are somewhat lacking. The antibodies could be a knockout punch or they could not work (Sam could develop a HAMA early) and then after having had high dose chemo our options would be limited. Here is a definition of antibodies I found on our listserv from a post a long time ago, it’s a pretty basic definition:
“Antibodies – The 3F8 Antibodies are designed to seek out and attack tumor cells. The body’s immune system responds by making an antibody to fight the mouse antibody. The mouse antibodies die off, but the immune system’s ultimate response is a HAMA (human anti-mouse antibody response). The “right” type of HAMA allows the immune system to continually recognize neuroblastoma, mimic the mouse antibody, and destroy the neuroblastoma cells. There are three pattern classifications of HAMAs. Pattern One – No HAMA. Doctors have found that in almost all cases, if the antibody treatment continues a HAMA will eventually be produced. The N7 protocol once ended after 4 rounds of cold antibodies. That is no longer the case if the patient has not developed a Pattern Two HAMA. Pattern Two – This is “the best case scenario” response to antibodies. The HAMA developed in time and at the level desired. Doctors are working and researching how to make Patterns One and Three achieve this response. Pattern Three – This pattern is too much of a HAMA too soon.”
Obviously traveling to New York right now is not the most convenient but we will do what we think is right for Sam and will make an adventure of it if we do. No one is sugar coating anything for us, relapse is not good with this disease. I can give you the ugly statistics but I won’t. However, there are kids who respond to relapse treatment very well and since right now we are only dealing with one spot, we have hope. I go from feeling numb, to crying my eyes out, to thinking everything is going to be all right and the HVA/VMA will be fine and the next MIBG will be negative, or that Sammy will respond to low toxicity treatment and in a few years one of the new trials will really be able to knock this (****!!!&^*& disease out. I’m quite the schizophrenic.
I’m very grateful that Sam is feeling fantastic and that gives me the most hope. Though this might be easier to accept if he were feeling badly, I’m so happy he’s not. He has no pain anywhere and his energy level is just amazing. His day yesterday consisted of playing with Elizabeth, Andrew, Rianna, and baby Nixon, going to the park in the morning while I worked (not a whole lot done as you can imagine). In the early afternoon he played with Mimi, then we went to karate where he sparred, then went to free play at tumbling where he and Andrew had me chase them around (as much as a pregnant woman with only one week to go can chase), then we went to his first meeting for his soccer team this fall. He’s very excited that Parker (a boy from his class that he thinks is so cool) is on his team and he got to meet all his other teammates. I debated going to the meeting given what is going on but then I figured, what the hell! As long as he’s feeling great, we are going to continue to let him do all the normal things he wants to do. Maybe at some point I’ll have to talk to the coach about letting him be a permanent goalie (which he would hate, he likes to be up front with the ball) but for now he can play all we wants. We came home, ate a quick dinner and then because Sammy was so jazzed about soccer, went up to Kate Sessions with the new goals Neil and I got him for his birthday and played soccer. It was a funny scene at the park with both kids because Andy has no interest in soccer and always wants to swing. So I set up the goals as close to the swing as possible, play soccer with Sammy while doing a running commentary – which he insists on. I am Ronaldino from Brazil and Sam is Santiago from the movie GOAL. Then Andy yells from the swing, “Mom,. I’m slowing down!” so I run over to push Andy for while with lots of big “underwater pushes” that send him flying into the sky and laughing in delight. The little boy next to him saw him and decided his grandpa was no good so I ended up pushing both boys with underwater pushes. Sooner or later Sammy starts yelling at me to come back and play soccer and I run back over to start the commentary again, “And Ronaldino fakes out Santiago, moves down the field with the ball and he shoots, and…. misses!” This always makes Sam laugh. Anyway, luckily Charlie is staying put through all of this. After the park we went to the grocery store to get some milk -because Andy waking up to no milk in the morning is not pretty – and the boys wanted Starbucks hot chocolates and a cookie afterwards so we went to Starbucks and had a snack, then came home about ten to nine, the boys played “Secret Agent” which consists of them hiding under covers and crawling around upstairs like big lumps while I pretend not to see them, and hiding behind doors to jump out at me. I finally wrestled them into bed about ten o’clock. I’d say those are boys with lots of energy and zest for life!
I’ll post the VMA and HVA as soon as I get it.
Margot
Topics: Progress Reports | Comments Off on August 3, 2006
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